I was diagnosed with chiari type 1 back in 2007. I always just thought the only symptoms it caused were headaches, dizziness and loss of balance. I started thinking and did some research recently and realized chiari can do so much more. Aside from the usual symptoms I’ve noticed so many other things that could be caused by this. I’ve had insomnia for as long as I can remember along with anxiety and depression. I’ve also has dissociative episodes. Either depersonalization or derealization or both. I also space out a lot and have difficulty staying focused. Antidepressants and antianxiety medication have never really offered much relief. They might work for a short time but then they stop working. My psychiatrist only ever raises the dose and then the same thing happens again. A big problem with that medication is that one is xanax and after being on it for years for insomnia, I seem to have become dependent. I just want to know if anyone else has had issues with mental health.
I also have physical/neurological symptoms I’m curious about.
Some of those symptoms include:
-Heat intolerance
-Muscle spasms in my calves and feet
-Slurred speech or trouble finding words
-Short term memory loss
-Vertigo/syncope (or feeling as though I may faint or seize)
Unfortunately Chiari is varied and complicated. Remember that our brains are malformed and permanently traumatized. We therefore experience chemical reactions to this. I battled with insomnia and depression. At this stage, 25 years after diagnosis, my neurosurgeon said it was time to operate. This relieved both these problems. Severe headaches, problems concentrating, trouble focussing in long conversations or meetings etc. I was put on Remeron to help control the chemical reactions in order to prevent headaches - wonderful - seldom as in very seldom a much lighter headacke.
Insomnia and depression gone.
Any added pressure to your head could cause more pressure inside the head at the problem area. In my case I could not lie down to sleep without going into very scary heart palputations. I am now on meds for this, problem solved.
I googled the side-effects of Xanax. Just about all your symptoms, also derealization and depersonalization are listed, so too all the other things you are battling with, but for muscle spasms in calves etc.
With Chiari your neck vertibrae are being affected, impacting nerves etc. You could find when you stand for an extended time you might find it a strain from the neck down. Depending on which nerves are involved it could cause spasm down to the legs. Neck upper-back spasm is to be expected. You could expect the same down the arms and fingers.
You need a neurologist to check on your medications and have a review of it taking into consideration the many side effects of Xanax you are suffering from. All the best. Flerrie
I was also on a tranquilizer for 5+ years for insomnia. At first, I was on Xanax, but then the docs switched to Lorazapam. (They said Loraz was ‘less addicting.’ Ha! All tranquilizers are addicting!)
My concept is that - with Chiaris, the brain stem is what gets ‘squished’ by the brain ooze and skull. It is the brain stem that is in charge of putting you to sleep at night and waking you up in the morning. It’s lke your brain’s ‘spark plug.’ When my brain stem was under constant squish, I never really woke up - thus “Chronic Fatigue Syndrome,” and I could never go to sleep - “Insomnia!”
Even 5 years post-Chiari surgery, I still have trouble falling to sleep, and need a sleep aid. My GP prescribed me Lorazapam - but ONLY as a last-resort pain med. I have to be so very careful with Loraz. and I really only do take it to stop extreme nerve pain - never to help with sleep anymore. Because, the minute I take even the smallest dose of tranquilizer, the addiction symptoms kick in - like my pain threshold decreases exponentially, new pains pop up all over, and I start sneezing endlessly (sneezing is a withdrawal symptom of tranquilizers).
I’m curious to know what you find out from your neurologist for sleep… because I would like some help knowing what might also help me with sleep!
Thank you for telling me about your experience. I’m not sure when I’ll be able to make an appointment with my neurologist but when I do go I’ll be sure to update you.
I’ll be anxiously waiting to hear your update. I sure would like to find help with sleep. Like I said, I am taking over-the-counter sleep aids every night - and they leave me with such a ‘sleep hangover’ the next morning. I’ve tried all kinds of homeopathic sleep aids, and they stopped working. Lately, I’m trying a little of both - and it puts me to sleep, but really draggy the next morning.
That’s just the thing… Lorazapam REALLY WORKS. It works better than any other sleep aid I’ve ever tried. I never wake up with sleep hangovers - I always wake up with all kinds of energy and motivation - and Loraz puts me to sleep relatively quick. But… sigh. All the side effects that instantly rear their ugly heads!
So… yeah. I’m waiting with baited breath for some wonderful advice!
Hello,
I’ve had a very similar experience with my chiari. It has progressively gotten worse over the years as I get older, but I suffer from major depression, short term memory loss (I’m only 23), chronic fatigue, depersonalization, trouble focusing, and all the other obvious chiari-related issues. For insomnia, I have found the best option for me is a sleep mask. It sounds ridiculous, but I believe that a main cause of my insomnia is the fact that I cannot “shut my brain off”. And for whatever reason, having the sleep mask really helps me to do that. However, no matter how many hours of sleep I get in a night, I will still be absolutely exhausted the next day and getting out of bed is always an issue.
For my depression, I’m on the highest prescribable Wellbutrin dose, but it doesn’t help as much as I’d like it to. Like already said by another user, I definitely believe that even though not physical aspects, these mental health issues can be related to chiari due to the complex nature of the diagnosis. I am very happy to read that those who have had the surgery say these mental illnesses have also resolved post-operatively. Gives me some sort of hope! I haven’t had the decompression surgery yet, mainly out of fear and finances, but plan to do so eventually.
I, too, would be interested in hearing how your story turns out/ what your neurologist says. Have you thought about going through with the surgery?
I’m 25 so the short term memory thing is awful. I began to wonder with all of these symptoms, if I had a brain tumor but then I remembered my chiari. I just thought about it for awhile. “If there’s pressure on the cerebellum, could that cause pressure in other areas?” There’s also the whole lack of CSF thing. I’ve been doing so much research, I feel very certain my chiari could be causing the majority of my symptoms. Just last week, I read a study about a girl who had been diagnosed as autistic but later in life it was discovered she had chiari. She had decompression surgery done and after she had recovered, she no longer met the criteria for autism! So, yes, I am very interested in the idea of surgery. But as you’ve stated, it sounds quite scary and I have some financial trouble. I’ve had a few surgeries before for another condition I have called Arteriovenous malformation. I’ve had three removed throughout different parts of my body but I didn’t feel frightened of those operations because none of them involved my brain! I’m still a dependant on my mom’s insurance and my dad has told me the outdated view, “it’s all in your head”. My mom is more concerned, however. I haven’t been able to get a job because I seem to always be affected by my illnesses in some way. That being said, I have no money for these things. It is my parents who pay for my medical bills. I still live at home and I feel like the biggest burden. They’re struggling financially as it is. So I don’t know when I will be allowed, more or less, to see my neurologist. My mom seems on board but my dad is doubtful. I just want some answers. I really want to go and hope that I can in the coming year. I will be sure to keep all of you updated, here on this post, about any progress I make.
It is so complex. Your brain is basically too big for your skull. You could go for many years not feeling the pressure, just the pain and other symptoms. But, as in my case, I one day started feeling the pressure inside my head. It felt as though my brain would pop if I could not get it out my skull. Depression, emotional absence, were very much part of my life. I spent 18 days in a wellness center receiving psychological as well as psychiatric counseling daily. Three weeks later my Neurochirurg operated. I remain on Remeron to prevent headaches and it also cayses me to sleep very well. I seldom have pain, but do at times have an awareness of discomfort. I also never had a CSF blockage. As chiarian you might experience your head feels too tired for a conversation or it feels like talking causes your head to feel more pressurized which could lead to antisocial behaviour. Keep us updated. Merry Christmas
I do feel pressure in my head when I’m in a social setting for too long. I’ll feel pressure and then I’ll feel dizzy/light headed. I also start to feel unbearably warm. If it happens while I’m at home, I’ll take a cool shower. It seems to at least help with the feeling of being overheated. I remember when I was eight years old, I kept getting headaches every day during the summer. My pediatrician at the time said I could take tylenol or ibuprofen but also caffeinated beverages could help. I believe it was my chiari causing those headaches. I always got headaches from laughing or moving my head the wrong way. It makes me wonder why no one thought to order me an MRI when I was younger. I was 15 when I got the diagnosis and the MRI I got was for the arteriovenous malformations(AVM) in my face. The chiari was just an extra finding which seems to be how a lot of people discover that they have it. Merry Christmas to all of you too. I’ll be keeping this post updated as I attempt to go on this journey.
It is really unfortunate that most of the time, for anything neurologically related, you have to be in very serious condition before they decide intervention. Also equally as unfortunate that “very serious condition” has to entail symptoms that are visible/physical, rather than listening to the patient who says they have a headache, dizziness, nausea, etc. My grandma had a chiari and the decompression surgery. As well as my best friend from middle school - crazy how that works? Either way, I was only knowledgeable about chiaris because of them and my awareness allowed me to advocate for myself. I’m one who only has a 4-5mm herniation, but has grueling symptoms. I was told it was not what was causing my headaches and was put on migraine meds. Knowing my body and that it was NOT migraines I was having, I sought out a chiari specialist who finally diagnosed me and suggested the surgery. I mostly am waiting until my probational period at a new job ends, so that I can go on short-term disability and have the surgery. I, too, am still on my parents insurance (thanks Obama!), but am fortunate to still be able to hold down a full-time post-college job due to it being flexible in the sense that I can work from home when needed. However, college itself was a struggle for me, which reflected in my grades quite a bit. I had aspirations of medical school, but that is not an option for me at this point with my GPA. I simply couldn’t get out of bed most days. Depression restricted everything I did, and still does most of the time. I have only a tiny amount of energy on a good day - as I am sure you all can relate to. With that said, it sounds like chiari has completely taken over your life. I really believe that despite what your parents say (or anyone!), you need to go see a neurosurg again. Ultimately, this is your life and chiari is taking a lot of it away from you. From what i’ve read, it seems like for majority of people the surgery really does help.There are always ways to make ends work financially.
I know I’m going to sound dumb asking this… but, what is a sleep mask?
I’m wondering if I have one already and don’t know it. I’m desperately looking for good ideas for falling asleep - and your idea for a sleep mask sound great. For Christmas, a friend of mine gave me a cloth-type-thing that goes over the eyes that is held on by elastic in the back. Is that a sleep mask?
This is the one I have. But they have a lot cheaper ones on amazon and such. It just helps me block everything out and calm myself, which ultimately helps me fall asleep!
Haha Jess is absolutely correct. There are no stupid questions! Oh! And I have an update!
Something I hadn’t mentioned is that I experience extreme nausea a lot of the time and I always thought it was just GERD but I had an appointment with my GI this morning and he was asking me if I could relate the nausea to anything else. I mentioned my chiari expecting to hear “that’s asymptomatic blah, blah” but he told me it’s very plausible. He told me I should definitely set up an appointment with my Neurologist! So now that I actually have a doctor telling me that I should see my Neurologist, I feel that I have absolutely no excuse to doubt myself and neither does my dad! So I’m going to request an appointment and we’ll see where it goes from there! Excited!
It just so happens that someone just gave me a sleep mask for Christmas a few days ago at a party! It’s hot pink, even!
I suppose not all sleep masks are created equal, though. Is the Nordstrom’s brand super soft and fluffy? I don’t know about you, but Chiari’s has made me super sensitive to sound, sight, touch, smells, etc… I cannot stand any cloth that feels scratchy! Feels like insects stinging. On my face, especially - I can’t tolerate hats with any elastic, scarves with rugged seams, etc. Soft and fluffy! Has to be soft and fluffy! (love my fleece stuff)
I don’t know why I didn’t think that the pink eye mask wasn’t a mask?!?!. I suppose because for several years, I was on a CPAP machine - and had to wear one of those wretched face mask things. I was envisioning a ‘sleep mask’ being a part of a mechanical device. Silly me!
I tried the CPAP for a year - with wretched results. The CPAP did everything BUT put me to sleep! However, a sleep test at a sleep lab did show my brain was waking itself up 90 times within each hour. Now I clearly know it had nothing to do with sleep apnea. It had everything to do with Chiari’s - my brain stem simply refused to put me to sleep like it was supposed to. Even now, 5-years post surgery, I still have grief getting to sleep.
So, I am going to try the sleep mask. Thanks! Super idea!
Of course! I really hope it helps. The one from Nordstrom is pretty soft, but definitely give the one you got for Christmas a try first to see if the more expensive one is worth the investment. I’d be interested in hearing how it works for you!
When my headaches are really bad, I tend to get nauseous as well. There have been times where I’ve thrown up at work simply because my headache is so bad. When I go to the ER when my headaches are unbearable, I am usually extremely nauseous and throwing up at that point. To try to avoid that, when I know my headache is bad enough to make me that nauseous, I wear “seabands”. I got mine at Target. They’re for motion sickness, so typically people wear them for cruises and stuff, but they work wonders for controlling my nausea during times like that. I’d give that a try if it’s persistent nausea.
I’m so glad to hear someone validated how you’re feeling, though! Wishing you the best at the neurologist!
Wow! I am loving my mask! It’s rather a small one. But, it is very soft and fluffy -
and my skin isn’t complaining one bit. Also, I find that darkening the room really does seem to quiet down a good part the restless brain. I’ve noticed that since post-surgery Chiaris, my 5-senses have become hyper-sensitive. Apparently, that means I have been needing total darkness to go to sleep - thus the mask has come to the rescue! Thank you so very much!
Now, I have another question to help with another hyper-sensitive sleep problem… noise! Since I don’t pay attention to anything I can see at night, I am listening to every sound that fills the air! The country road outside my window is sounding like an Interstate. My landlords upstairs thump and bump and bang for hours after I crawl into bed. (They are night owls - whereas I am an early bird!)
I have tried to use ear plugs that I picked up over a decade ago from Australia. Before Chiari nerve damage, the Australian earplugs felt so very soft to me. And, effective! Those Aussie plugs do block out every sound wave. I loved them.
I have shopped around here in the State for alternative earplugs - but all the earplug products I’m running into in the State are for large ears. They don’t fit into my narrow ear canals. They fall out. (I can’t even find ear buds that will stay in! Does the entire USA population have wide ear canals?) Somewhere, there has to be ear plugs for kids.
Sadly, those once-soft Aussie plugs scratch and grind and grate on my now-tender ears! Within a minute of inserting the plugs, my ear canals are aching - and can’t go to sleep with my ears screaming about the pain. Sigh.
I have tried to drown out night noise with the ‘white noise’ of a fan. But soon, the “white noise” of the fan starts provoking tinnitis - a ringing in my ears that soon drowns out all quiet. Sigh. Sometimes I can’t believe I’ve become so tender. While growing up and being ‘normal,’ I used to pride myself on how tough I was. Now it is such a challenge being ‘trapped’ in a tender, sensitive, pansy Chiari body. The ‘new normal,’ I guess.
Any ideas on noise reduction? (other than winning the lottery and building secure & quiet & plush & dark little bedroom? )
As far as the noise problem, I can’t say I have the same issue. I also wouldn’t say that I am hyper-sensitive to any of the senses. Perhaps to some degree, but not anywhere near what you describe. My only idea is to try have calming noise (like waves crashing, or the rain falling) in the background? I have this app on my phone called SleepBot (I think it’s available on most Apple products) that does that… and actually a ton more. I’m a very active sleeper - always talking, moving, etc.- so it’s recording feature is interesting for me to look back and hear what I said during the night or check my sleep patterns. You can set it for x amount of time to play ambient noise until you fell asleep. I’m not sure if you have a partner that that would bother, but it’s worth a shot if they’re okay with it? I wouldn’t think something of this nature would initiate tinnitus, but I could me wrong… Let me know if you give it a try! (although winning the lottery and building sound-proof sleeping quarters does sound like a viable option).
Well, it’s been a while but I’ve finally made an appointment and it’s tomorrow at 11am ct! I had to make an appointment with a different NS because the one I had seen stopped taking adult patients. I was so upset at first because I didn’t think I’d find another in the same town but I did! In fact, this new one I’m seeing is apparently the go-to guy when it comes to chiari where I live! I feel super lucky about that! So tomorrow after my appointment, I’ll let you all know how it went.
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